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Caregiving Collaborations:Increasing Family and Community Capacity

6th Annual Elder Friendly Futures ConferenceSeptember 14 2017

Heather M. YoungDignity Health Dean’s Chair for Nursing Leadership Associate Vice Chancellor for NursingFounding Dean and Professor, School of Nursing

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There are only four kinds of people in the worldThose who have been caregiversThose who are current caregiversThose who will be caregiversThose who will need caregivers

(Rosalyn Carter)

Yet, caregivers are relatively invisible in our families,

communities and health care systems

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Our time together

• So what are the problems we are trying to solve -where are some of our challenges and opportunities?

• How might we think about approaches to build family, community and system capacity?

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Problems to solve –challenges and opportunities

• Increasing demand with less supply of caregivers• Diverse strengths and needs among caregivers• Communication and coordination among all the

moving parts• Availability of supports, services and information• Building capacity – family, community, workforce• Policies that support family caregiving

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Violet BrownLives in Jamaica117 years oldOldest son is 97 Has been going to her church for over 100 years

Oldest Person Alive Today

"I have six children, one died. Five alive, but them all sick. Them sick more than me," she said, bursting out in infectious laughter.

Jamaica Observer

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Age Wave is Hitting the Shore• Population >65 will increase from 14.9% in 2015 to

22.5% in 2050• In US between 1980 and 2010, >90 tripled, >100

increased by 65.8%• First baby boomer turned 70 January 2016 and

someone turns 70 every 8 seconds for the next 30 years• Dependency ratio 21 in 2010 will increase to 30 by 2030

US Census, 2015

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Bronzing (Browning of the Graying) of America 2012-2060 (% increase in >65)

0%

100%

200%

300%

400%

500%

600%

Hispanic AfricanAmerican

AmericanIndian

Asian/PacificIslanders

Caucasian

(US Census, 2015)

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Societal Trends

• We have more grandparents than grandchildren• Fewer children, more adults without children• Geographic mobility, changing migratory patterns • Growing population of rural older adults• More blended families• Higher rates of divorce for adults > 65

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Six Generations

Dorothy: 103Margaret: 77Lucy: 57Natalie: 37Hannah: 19Lili-Mae: 1 month

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Health Care Trends

• Discharging older adults sicker and quicker• Bundled payments with incentives to push to

lowest cost setting (i.e., home)• Hospitalists• Greater range of options in care/services• Preference to be at home• Increasing consumer direction• Higher acuity in assisted living and residential

settings

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Demand Driven by Common Chronic Conditions(# individuals > 65 years old in millions)

0.05.0

10.015.020.025.030.035.040.0

20142050

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What do caregivers do?• Household tasks, meals, transportation, laundry,

managing money• Self-care, supervision and mobility• Emotional and social support• Health care – encouraging healthy lifestyle,

treatment adherence, direct care (medications, wound care), respond to acute needs/emergencies

• Advocacy and care coordination (with network and health care providers)

• Surrogacy - financial and legal matters, personal property, advanced planning, treatment decisions

Families Caring for an Aging America, 2016

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Who are the caregivers?• 34.2 million adults in the US provided unpaid care to an

adult in past 12 months• Caregiving households: 21% Hispanic, 20.3% African

American, 19.7% Asian American, 16.9% White• 60% female caregivers, 65% female care recipients• 85% are a relative, 49% parent, 10% spouse/partner• On average, have been caring for 4 years, 24% >5• On average, spend 24.4 hours/week providing care• 60% help with ADLs• 57% help with medical/nursing tasks• 53% have help from another unpaid caregiver• 56% work full time while caring• 60% made change at work

Caregiving in the US 2015

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Diversity among caregiversRelationship

(partner, adult child, friend, and

more)

Caregiving experience and skills

Age, gendersexual orientation

Cultural backgroundrace/ethnicity

Other family

obligations

Employment status

Religious affiliation

Community connections/ strength of

network

Care recipient(s) needs/strengths

Length of caregiving

Housing situation/ proximity

Location on trajectory of

care

Financial resources

Disease/ condition-

specific issues

Caregiver mental and

physical health status

Communication and advocacy

skills

Motivation and

relationship quality

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The Caregiving Trajectory

Families Caring for an Aging America, 2016

16AARP Research, 2016Family Caregiving and Out-of-Pocket Costs: 2016 Report

Caregivers provide ~90% of long term care

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Home Alone: Family Caregivers Providing Complex Chronic Care

AARP Public Policy Institute, 2012

• National survey of 1,677 family caregivers), mean age = 53

• 68% provided care for > 1 year• 47% working, 27% retired• 40% lived in the same house as the

care recipient• 55% of care recipients lived with

multiple chronic conditions, mean age = 71

• In past year:• 64% visited an emergency department• 57% had inpatient hospital stay

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Home Alone: Medical Nursing Tasks

AARP Public Policy Institute, 2012

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Outcomes of caregiving

Depression/anxiety Affect/mood Health Life satisfaction Social isolation Financial loss Gain – enrichment, meaning

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Caregiver Health: Negative Outcomes• Higher levels of depression and mental health

problems (Vitaliano, et al; Schulz, et al; Zarit, et al)• Higher stress with lower income • Increased blood pressure, insulin levels, metabolic

syndrome (Vitaliano et al.)• Depressed immune function (Kiecolt-Glaser)• Higher risk for morbidity and mortality (Schulz & Beach)• Depressed caregivers more at risk to abuse care

receiver (Beach; Williamson)• Pessimism as predictor of depression and poorer

health (Lyons)

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Caregiver Mental Health:Positive Outcomes

• Sense of mastery, competence (Lawton; Orbell; Archbold; Stewart)

• Preparedness (Archbold and Stewart)

• Self-efficacy (Haley)

• Caregiver satisfaction (Albert; Lawton)

• Enriched relationships (Archbold; Braithwaite)

• Enjoyable aspects of caring/Uplifts (Cohen; Logsdon; Kinney)

• Meaning in caring (Farran; Perry; Young)

• Feeling appreciated (Archbold; Kramer; Kinney; Ryff)

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Gender differences

• Women tend to spend more time caregiving, and perform the more difficult tasks

• Women report more uplifts • Women more likely to report anxiety, worry, and

depression• Men exhibit poorer health (cardiovascular, metabolic,

and stress hormones)

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Thinking about approaches• Intra and interpersonal issues• Person-environment fit• Community capacity building• Systems of care• Technology

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Conceptual models• Atheoretical• Stress/appraisal/coping (Zarit; Pearlin; Vitaliano; Lawton)

• Family stress (Pruchno; Kramer)

• Transitions (Schumacher; Young)

• Role strain/quality (Archbold; Stephens; Lyons)

• Social exchange (Picot; Walker)

• Symbolic interaction (Perry)

• Existential models (Farran)

• Feminist models (Hooyman)

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Caregiving intervention research

Early studies: psychosocial, skills training, respite, counseling• PREP (Preparedness, Enrichment, and

Predictability) (Archbold, Stewart)

• REACH (psychosocial, skills, environmental modification, technology) (Schulz, Burgio)

• STAR (antecedents, behaviors, consequences) (Teri)

• Physical activity (King)

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Systematic Review of multi-cultural caregiving 1980-2013 (n=238)

Experiences of Caregiving

LatinoValues of familial reciprocity (familismo) and decision makingAcculturation as a major factorPreference for home careDistrust of institutionsExpected intergenerational experienceBurden, family conflict, availability, personal costs

African AmericanTraditional family values – reciprocity,

family integrity, role modelingCaregiving as an expression of love,

respect and spiritualityCentrality of maintaining cohesion,

control and stability of family and community

Complex web of support Racism/discrimination

Asian AmericanTraditional norms of filial piety, changing with new generationsSocio-cultural expectations Strained interpersonal relationships and role strainValues and expectations of family and formal systems do not always alignPride/shame in asking for help

Native AmericanCultural expectation to care despite

limited resourcesCollective (communal) care

orientation and complex exchangeAnxiety re complex medical problems

and ensuing family conflictsMulti-dimensional experience: high

rewards (reciprocity, enjoyment) and burdens (role conflict, negative

feelings, low efficacy)Dearth of formal supports

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Impressions Limited longitudinal studies - limited understanding

of caregiving trajectory Interventions of multicultural caregivers use the

Stress-Appraisal-Coping model applied to Caucasians Clear importance of community/culture – yet

individual approaches dominate Dearth of interventions to mobilize and sustain

caregiving network, communications, conflict resolution or advance planning

Limited studies addressing influence and potential of technology

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Recommendations Address heterogeneity of groups (Latinos, Asian

Americans, Native Americans) Expand conceptual models for research (i.e.,

reciprocity, family development/dynamics, feminist ideology, stigma/discrimination, sociological theories, etc.)

Consider network and dynamics (extended family and non-kin)

Incorporate longitudinal view of caregiving (caregiving trajectory)

Address context of caregiving in intervention research (socio-cultural barriers and facilitators)

Apesoa-Varano, Feldman, Choula, Reinhard and Young, 2015

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LGBT Caregivers

• Diversity within the community, multiple identities• Attention to societal context and caregiving

network –”families of choice”• Social isolation and high rate of living alone among

older adults• Limited longitudinal studies – research field is

relatively young• Discrimination and discriminatory policies pose

barriers at multiple levels – from interpersonal to systems –health insurance, health care, social services and housing

Fredriksen-Goldsen and Hooyman, 2007Stein, Beckerman, Sherman, 2010

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What do caregivers need?• 32% say a health care provider asked about what

they need to care• 16% say a health care provider asked what they

need to take care of themselves• 84% could use more information or help on

caregiving topics (safety, managing stress, dealing with behaviors or incontinence, nursing tasks)

• 15% have used respite• 30% would appreciate being paid or tax credit• 49% would like their name in the EHR• 22% want help with end of life decisions

Caregiving in the US 2015

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Care receiver: 61 year old man living in a rural community with Parkinson’s Disease, early cognitive impairment, sensitive to meds, uses a walker, needs help with ADLs, judgment issues, loses track of medications and timing

Caregiver issues: Spouse who has heavy job responsibilities, also caring for mother in assisted living, two sons who live 90 minutes away

Family issues: Coordinating care and communication, assuring back up and coverage, training for tasks, emotional support, home safety, financial planning

Community issues: In-home help, neighbor involvement, home remodel, safe walking, broadband internet access

Health System issues: coordination among specialties, recognition of primary caregiver expertise, transition planning

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Aging is a Family Issue

• We live in the context of connections and ties• Families make the greatest caregiving contribution• We have expectations of each other and of

ourselves – sometimes unrealistic• Families have histories and established dynamics• Our choices affect others• Many family members want to avoid a crisis, and

want to help

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Needs of families who are caring:Communication•Decide process for decisions: who, what, when,

how• Identify shared values and goals, expectations,

and areas of disagreement•Project likely trajectory—health, finances,

preferences•Consider what each member can contribute and

how they might coordinate and share the load• Identify and evaluate salient options and back up plans

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Help Families Can Use

•Health care professionals—to help with health assessment and projections, identifying options, provide support through transitions

•Legal and financial advisors to assist with estate planning, guardianship, real estate transactions

•Facilitated family meetings/conflict resolution •Community and web-based resources to provide

information about options and considerations

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Implications for Communities• Identifying health priorities and actions at the

community level•Building community capacity•Breaking down silos, democratizing resources•Health system design – across settings• Imaginative partnerships •Enabling technology

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Priority areas for community solutions•Community level planning – gaps in services, accessibility, livability, transportation, opportunities for activity and engagement

•Supports for family care/distance caregiving•Health promotion and respite•Mobility – home and community design•Bring people together – address isolation• Improve systems of care and coordination

among systems•Role of technology in health •Emergency preparedness

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Targets for Health Care Systems• Recognition of caregivers as part of the team –

assess, include, support, educate• Consumer preferences – advance planning and

communication• Episodic and chronic management – awareness of

trajectory• Integration across systems of care (acute, long-term

care, informal)• Health disparities and health equity• Emphasis on transitional care/care coordination• Financial incentives for managing across systems• Cultural safety and inclusion

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Technology can help

• Cuing, reminding• Communication with care providers, family• Remote monitoring/care• Telehealth• Medication management – organizers,

dispensers, pumps• Home monitoring – security, lights, temperature• Electronic health records• On-line support and education

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Health Care Professional Capacity• Workforce preparation in gerontology and care of

older adults – professionals and unlicensed staff• Family caregiving – how can health care

professionals support family/friend care• Full practice authority/delegation• Interprofessional collaboration• Health system innovation• Diversity of the workforce

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Policy and Leadership Opportunities• Advocacy, public outreach, broad communication• Caregiver-friendly work environments• Housing, transportation, community resources• Universal design, urban planning• Federal and state policies to support caregivers: family

leave, nurse delegation, home care referral registry, Family Caregiver Support Program

A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers

WA state rankings:#1 Overall#11 Affordability and access#2 Choice of setting and provider#15 Quality of life/care#5 Support of family caregivers#3 Effective transitions

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The Care Act: Caregiver Advise, Record, Enable

Under the CARE Act, hospitals will:• Allow patients to designate a family caregiver• Notify the family caregiver when the patient is

going to be discharged• Give the family caregiver an opportunity for

instruction and demonstration of the medical tasks required when their loved one returns home

Now law in 39 states

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The Home Alone AllianceSM

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Caregiving Resources• School of Nursing

partnership with AARP and the Home Alone Alliance

• Series of online video tutorials with accompanying articles in AJN – medications, mobility, wound care

• Leverages accessibility of the Internet

• Reaches people when and where they can receive information

http://www.aarp.org/ppi/info-2017/home-alone-alliance.html

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Caregiving Video

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Family Caregiving Institute

• Discover and disseminate knowledge needed to improve systems that support the capacity of family caregivers to advance health and well-being for older adults with serious illness and for themselves

• Enhance capacity of family caregivers to thrive while enacting their vital role safely and effectively

• Increase capacity of health care professionals to deliver person- and family-centered care by partnering effectively with family caregivers.

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